In the last three weeks, it’s likely more people have heard of ALS than at any other time since Lou Gehrig shared his diagnosis at Yankee Stadium in 1939. And it’s a good thing people hear about it. Every day, this savage neurodegenerative condition attacks otherwise healthy, athletic people then progressively strips away their ability to walk and speak, culminating in respiratory failure within two to five years. It needs a solution.

But awareness alone won’t solve it unless we convert that awareness into action — the kind that not only helps end this disease for future generations but also helps current patients increase their odds of living longer.

In 2008, my dad became the second member of my family to be hit with ALS. I left my finance career in New York and returned to my hometown of San Jose to focus on changing the treatment landscape for ALS patients. Patients were routinely told that they should hold no hope of finding effective treatment before dying, yet they could help future patients by donating to research. Well, giving up on my dad was unacceptable, and I found hundreds of others who felt the same way.

One project I helped start, the ALS Emergency Treatment Fund, is now the leading non-profit for providing patients with immediate treatment options, and it remains the only independent platform for Expanded Access to new medicines in clinical trial. No marketed products are known to be effective at slowing or stopping this disease. So if you have ALS today, and you consider the years it takes researchers to develop a new drug from scratch, access to existing investigational drugs is crucial.

Other organizations focus on other important things, such as assisting families, building support networks and conducting basic research and pre-clinical drug development, the last category being extremely important but still lacking the possibility of yielding an FDA approved drug in time to help people today. No single organization does it all, but we think our piece –medical options for current patients — is just as important as the others.

Unfortunately, ALS Emergency Treatment Fund is not a household name. We and the handful of other outfits doing critical work in ALS have been relatively invisible during this awareness wave.

The Ice Bucket Challenge began in Boston to support ALS research and treatment, not to help any specific ALS organization. But the marketing teams of the big organizations did a great job getting in front of it. Many people believe it is ALS Association’s (ALSA) own event.

Good for ALSA. It received $90 million. But with just 5 percent of that, we could dramatically improve treatment access for every ALS patient in the U.S., immediately and permanently. It’s unclear whether ALSA will allocate any of what it received to programs like ours.

We’re in awe of the outpouring of support. We would like to see some of it go to programs that give ALS patients hope for effective treatment. Please continue with the ice buckets, but this time find an ALS nonprofit that you think will make the greatest impact. Or skip the ice and simply tell your friends how they can help real patients.

My dad and my grandfather both died without access to treatment options. But now, with public support, ALS Emergency Treatment Fund can offer real hope for a longer life. To learn more about our work for treatment access, visit us at www.alsetf.org.

Jess Rabourn is executive director of the ALS Emergency Treatment Fund. He wrote this for this newspaper.

In closed door talks, Sen. Dianne Feinstein agreed to a major new water policy for California that sells out the Delta and guts Endangered Species Act protections. Sen. Barbara Boxer is fighting the good fight to remove the rider from her comprehensive water infrastructure bill, but it may take a presidential veto.